Yay! School

8/19/2011: 12:19 AM

And I thought my life was crazy before cancer.

The kids started school the day before yesterday. They both love it. Yesterday, I presented a little powerpoint to Davis's class. He was supposed to help me, but he left me high and dry. The presentation covered some basic questions kids might have (What is leukemia? Why does Davis wear a mask? How did he get it? etc.), but the focus on the presentation was to inform the kids of the importance of good hygiene and not coming to school sick. The kids were so attentive. We learned hand washing techniques, wiped down tables, and wore masks to see how Davis felt in them. I just love how they embraced the extra lengths we are going to in order to make Davis safe at school. Kudos to these fantastic children for adapting so well and looking after Davis.

Later on Wednesday, Davis had to go to Sarah Bush to get his weekly CBC count. The last few visits, we have run into problems with his blood clotting. It happened again this week. He hates when this happens because it means another finger prick. On the second draw, the nurse used this new gadget that actually pulls the blood off of his finger, puts it in the tube, and circulates air in it to keep it from clotting. Pretty cool. We are requesting it from now on. 

Today was Davis's first full day of school. His chemo destroys his appetite, and he refused to eat breakfast.  Unfortunately, he still has to take his morning medication. He ended up with a rotten belly ache. On top of that, he had a horrible headache that he couldn't shake. I dropped him off at his room and made sure he was situated and then headed out. Unbeknownest to him, I busied myself at his school by helping the school nurse with some paperwork. This allowed me to check up on him, give him his space, and be close by if needed. Total win-win. With the exception of a little sleepiness, Davis had a perfect day. He loves his teachers, class mates, . . . everything.

I got a call from the doctor's office today with his counts from his CBC.  Overall, the numbers were pretty good. His white blood cells were still low at 2.2 (normal is about 5, I think). His ANC (immune system) was up to 1700 (above 1500 is considered healthy), which is very uncharacteristic.  His hemologlobin took quite a hit, and he had dropped to a but above 7, so he will receive a pint and a half of blood tomorrow morning. That completely explains the headaches that he has been experiencing the last couple of days.

awesome new gadget

With the blood transfusion pushed to 8:00 in the morning, we had to rush home to get packed for the weekend (Davis has chemo the next four days).  We received a phone call minutes after we settled in. It was one of those you've-got-to-be-kidding-me phone calls. Sadly, our credit card was compromised somewhere or somehow, and we had a couple of thousand dollars charged to our account over the last couple of days. Luckily, we are not being held responsible for the fraudulent charges, but we are without a credit card. Kyle is wonderful about calling the proper people and places to make sure this issue was resolved. It's odd though; even though it is all working out, I still feel a bit violated. I comfort myself by thinking that some deserving child out there received a really nice computer and a couple of pairs of new tennis shoes to help him/her at the start of school. 

The inconsistency of routine caused by living with cancer is really beginning to wear on Annakate. She struggles with homesickness. She wants to attend every single doctor's appointment in an effort to keep us in sight. She has no desire to be away from us. She has been coming with us for most of the appointments and procedures, but now that school has started, it is impractical. She listens to reason, and I explain to her, "Now Annakate, if you had to go to the doctor's office and then get a spinal tap, you would want Mommy and Daddy with you, wouldn't you? We will be home as soon as we possibly can." She nods politely, not making eye contact. She understands, but it doesn't make it easier. I couldn't agree with her feelings more. I hate to be away from her. 



1st day of school



Tomorrow will be a full day for Davis. He will receive a blood transfusion, be fitted for his radiation mask, have a chemo treatment, and then have a LP (lumbar puncture) to place chemo into his central nervous system. I am ready to have it behind us.

We feel that the only explanation for Davis doing so well with his treatments thus far is because of the prayer that has been offered up on our behalf.  We love and appreciate your prayers so very much. You should know that they are working.  We ask that you continue to pray against short term/long term side effects, but most importantly for the healing and the CURE, as that is our ultimate desire. We will continue to praise God through this storm. It seems that blessings are far more noticeable than they used to be.

Thank you for your continued support.

We will keep you posted. 

8/15/2011:  10:20 PM

I know, I know.  I have been doing a rotten job at keeping the blog updated. It has been quite a whirlwind around here.

Let me catch you up. I can't remember when I last blogged . . . Friday, was it?  Well, Friday was spent in clinic. We were shoved in a little examination room from 8:30 AM to 5:05 PM. Thank goodness for the Ipad and Annakate. The Ipad provided the mind-numbing stimulation, and Annakate provided the entertainment.



good fun with friends



We headed to the hotel shortly after where we spent the next few days. Davis obviously spent a lot of time in the room. He didn't mind it too much. He has fallen into a routine of hanging out in his pajamas and watching TV. A few families from church were there for their annual planning committee weekend, so Annakate had a few friends to play with, which got her out of the room.

Once again, we are reminded in the power of prayer. The medication that Davis started on Friday is notorious for making children extremely nausea and sick with flu like symptoms. Many children are hospitalized because of dehydration. We were prepared for this. As a precautionary measure, we have been giving him anti-nausea medication around the clock, and he wears seabands (acupressure bands on his wrists) quite a bit. Although Davis does have bouts of nausea, he hasn't been sick once (so far). Thank you, God. All weekend, he continued to have energy and his counts appeared pretty strong going into the chemo.  We know that his counts (ANC, red blood cells, platelets) will continue to drop. The doctors told us that he may bottom out as early as next weekend (also called nadir). This means that he will probably not feel well (usually very weak and achy) and school will be held at home until his counts are in a safer range again.  Today, we started seeing a side effect of this chemo - zero appetite. Last month, we had to keep in from eating everything in the house (due to Prednisone), and now we have to force him to eat and drink.  But we aren't complaining; we know that we are so blessed that Davis his tolerating this chemo so well, and my heart breaks for the children who do not.

it's amazing how
well they get along



Today we met with the radiation oncologist at the Siteman Cancer Center. This is not part of Children's Hospital but is in the same Barnes Complex. To be honest with you, I had some severe stress over this radiation. To me, it felt that I had just come to grips with all of the changes and risk, short term/long term side effects, that accompany chemo; I wasn't ready to deal with one more thing.  Ok. Back to the appointment. After filling out a bit of paperwork, we were called back to an examination room.  A doctor, a fellow I presume, listened to the back story of how we ended up here, gave Davis a complete physical, and told us about the procedure.  Then, Davis's primary radiation oncologist, Dr. Mansur, came in and repeated bits and pieces of what we had completed with the fellow. Davis will receive the lowest grade radiation (12) to his brain for ten minutes a day for eight days in a row. We discussed the short term and long term side effects, and many of my major concerns were not issues because of the grade, length of duration, and length of time Davis will receive radiation. The most common side effect Davis might experience is sleepiness. The reason for the radiation is a preventative measure to keep the brain free of cancer. 

After the visit, Dr. Mansur's nurse, explained to and showed us how Davis will be fitted for a mask (hard plastic Spiderman looking thing) and  how the procedure will go down. They took us into the room where Davis will be getting his radiation, and they showed Davis how everything works. The mask will be placed over his face and bolted to the bed to keep Davis perfectly still (very scary in my opinion).  The radiation machine will circle his head for ten minutes (looks like a CT scanning machine), and then he will be free to go. Davis really thinks that he can do it without being sedated, and  Dr. Mansur is willing to give it a shot. I know for a fact that I couldn't do it with sedation. Actually, I would like them to sedate me when Davis does it. No can do though. :) I must say that St. Louis Children's and Siteman's do a fantastic job at catering information to Davis.  At every appointment, the conversation is geared to Davis and his questions and concerns. It seems the doctors are talking to him and not so much to us. I love it.



nurse kyle giving
davis his chemo



I nearly forgot to tell you the most exciting part. Kyle and I were taught how to administer Davis's weekend chemo. This will allow us to do some chemo at home. Since Davis tolerated it so well this weekend, we are able to administer it at home (most times). This will allow us to give him his Monday chemo and de-access his port all before he heads off to school.  This also means that we will be able to be home with Annakate.  Administering the chemo takes about 30 minutes total, and I was a whole lot more comfortable doing it than I thought I was going to be. Kyle is great at it; I think it fits his hands-on personality.

We will be heading back to Children's on Friday for more chemo. We will continue with the 4-day chemo he is on now, and he will have a LP (lumbar puncture) to put chemo in his spine. We refer to them as spinal taps. In the meanwhile, the kids will be starting school, something he is looking forward to; and we will be watching his counts.



my turn



We continue to appreciate your prayers for good health and strength and prayers for tolerance of the spinal tap (last one made him pretty sick). We pray against ALL side effects.  I have even started to pray for children in his class that they may practice good hygiene and be super healthy all year long.  Why not? We know what God can do.

I count my blessings every day and marvel at God's goodness.

We will keep in touch.

The Next Phase

8/12/2011:  1:57 PM

Wow. Where did this week go?  I apologize for falling behind on the blog.  It has been a hectic few days.

Davis has felt awesome all week.  He has felt close to his old self. He still manages to nap every day, and he still grazes between meals, but other than that (and the obvious medication routine), things felt back to normal.



Dr. Coffey and the floating head prepping
the patient

On Wednesday, Davis was entertained by Annakate. She is amazing. She has such an imagination and figures out ways they can play together. He rested most of the day to save energy for church. I was very apprehensive about letting him go to his Wednesday night church class. It is safe to say that I have morphed into Marlin, Nemo's dad, nearly over night. It just goes to show that God provides you with the perfect soul mate, because Kyle is a nice balance to my overprotective, stick-my-kid-in-a-bubble approach. Kyle thought attending class would be perfect timing since his counts were building and we had an appointment on Friday (usually sickness takes two days to manifest).  The doctors also feel it is important that we try to provide him with a seemingly "normal" life when his counts are high enough. He loved it.  Despite the precautions put in place, he enjoyed it and participated in everything with the exception of tug-of-war. A few of the girls, with their sweet nurturing spirits, looked after him. He now refers to them as his bodyguards.



performing the procedure

On Thursday, I met with his school principal, district nurses, and his fifth grade teacher. They are really bending over backwards to accommodate Davis and his needs. I am so appreciative of their willingness to go the extra mile to make Davis feel normal and included. And I know very well as an educator myself, that many of the accommodations and arrangements they are making are not required, and this is just another example (as I have heard many in the past) of how the administration and staff place the well-being of their students first. I am really looking forward to easing into the school year. Jefferson feels like home already.

annakate provided entertainment by using her hair
to make unibrows, moustaches, and goatees

On Thursday afternoon, Davis's friend, Drew, brought him a blizzard. They were able to visit for awhile too. It was the highlight of Davis's day. Unfortunately, I have very little details (and no pictures) because I was meeting with the teacher who was hired to replace me this year. I am never shy in saying that I work in one of the best school districts in the world and we function as a close-knit family, helping and leaning on one another. Needless to say, asking for a year off was heartbreaking for me. I love my job. I love the students I have been privileged to teach and befriend over the years. And I have figured out that the joy and happiness and worry they bring to me every day far outweighs what I have to offer: English knowledge and a listening ear. I know they do more for me than I feel I can do for them, so that is why this temporary leave is so difficult. I am grateful; however, to be able to leave my students in good hands, so that I can focus my attention and care on my son. 

taking advantage of the cooler temps

 Davis's ANC (immune system) was below the recommended 750 required for the chemo scheduled to start on Friday. His was 704. We were told to come down to Children's on Friday, and the CBC would be repeated. If his levels were too low, chemo would be postponed a week while his counts continue to build.  That brought us to today.

The doctors decided it was a go on chemotherapy today even though his numbers might not be ideal. They said there is no real risk and felt it was appropriate to pass on to the next phase. One of the chemo meds he is getting today requires major hydration to protect him from bladder irritation and bleeds. Our appointment this morning was at 9:30, his port was accessed at 11:00, and he is just now getting ready to receive his first chemo treatment. He had to be hydrated for up to two hours previous to the treatment and four hours after the treatment. We are hoping to be out of here by 5:00 or 6:00 PM. My, this makes for a really, really long day. Kids weren't designed to sit around this long.



being casted for chest guard

Oh, Davis met with an orthopedic and prosthetic specialist to be casted for a chest guard.  This will allow him to participate in mild or moderate PE and recess activities and more importantly, baseball in the spring.  He was able to pick out a design/color for his guard, and he chose camo.

We will be down here the rest of the weekend. Davis has three more days of chemo.  For awhile, his chemo treatments will be Friday, Saturday, Sunday, and Monday.  We meet with the radiology oncologist on Monday.  We were relieved to find out that Davis will only have two weeks of cranial radiation this first wave of the consolidation phase.

We have been reminded quite a few times today that this phase is as equally intense as the induction phase. Many children struggle with the side effects of the medications. We are praying these side effects off of him. We are praying that he will take this chemo well so that he can attend school for as long as possible. And of course, we pray every night for his healing and his CURE.

Thank you a thousand times over for your continued support and prayers. We draw strength from knowing that we are not fighting this alone, because we have an army of family, friends, and prayer warriors behind us.

We will keep you posted.

No News is Good News

8/9/2011: 10:56 PM

We really enjoyed ourselves last night. After Davis's P.F. Chang's experience, we hung out in the hotel and ordered a pizza for supper. He was feeling much better by evening and we were feeling couped, so we jumped in the car for a quick ice cream run. We relied on the TomTom to help us find an ice cream joint.  We were very excited when Edy's popped up on the TomTom. We followed the directions to an industrial park. Yep, the Nestle factory where Edy's ice cream is made. Not what we were expecting -- and no ice cream. We have to hunt and peck through ice cream shops because Annakate has an egg allergy, and many ice cream places use eggs in their recipes. After sorting through the TomTom list and out of fear of car sickness, we settled on an Oberweiss. As we were pulling into the parking lot, Davis blurts, "I am so lucky that I don't have an egg allergy, because that would stink." He cracks me up.

panera breakfast

We took advantage of our mini-vacation, and the kids and I stayed up until midnight to watch The Blind Side. They loved it. I had seen it before, but it did remind me how much I enjoy watching football. 

Pretty good day. We headed home from Chicago mid-morning, and boy, the drive felt unusually long. We tried to break it up some with little bathroom and drink breaks here and there, and we did stop and enjoy lunch and a little shopping in Champaign, but the ride was long. There's no place like home.



short hair



even shorter hair



We received a phone call from Davis's hemo oncologist. She had failed to mention part of the plan during our Friday discussion. She opened the conversation with "I have some news, and it's not bad by any means." I really think that is subjective. She informed us that the unofficial path report on Davis's bone marrow draw concluded her thoughts that his bone marrow is making about 3% of cancer blasts, which means he is in remission. She also shared with us that Davis will be starting cranial radiation in three weeks. This information was quite a surprise, as this had never been mentioned at previous appointments. She explained that Davis is high risk for relapse, and often if the cancer returns, it returns to the brain. The goal of this consolidation phase is to keep pumping chemotherapy into his central nervous system via spinal fluid and irradiate his brain to catch what the chemo doesn't.  This, of course, means more doctor's appointments and more short term and long term side effects.  So on Monday, we will meet with the pediatric radiation oncologist for a consultation.

Davis continues to shed. We decided it was time for yet another shorter haircut. The shorter do makes the thinning a tad more obvious. I think that adjusting slowly to the idea of being bald is the best approach for Davis. He sure has had hair a lot longer than expected.

This day has proved to be a long one, but an enjoyable one too.  Kyle focused devotions tonight on Proverbs 3:5-6: "Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths." I tell you, these scriptures have taken on such a deepened meaning as we continue to turn over our worry to Him. 

At this point, we know very little about the upcoming chemotherapy and radiation treatments.  We will learn more (and trust me, I ask a ton of questions) this Friday through Monday. My every prayer is that Davis will first and foremost be healed and CURED of this cancer. We continue to pray against ALL of the short term and long term effects, and we pray for his good health and strength to fight. With school starting soon, we pray for Annakate's health as well; it is important that she stays strong and healthy too. We ask that you continue to pour on the prayers and positive thoughts for our babies. We love, appreciate, and need them.  

We will keep you posted.  

Getting Back to Summer. . . Just in Time

8/8/2011:  5:20 PM

We had such a pleasant weekend . . . for the most part. Davis is chemo free for the week (other than what was put in his spine on Friday). The doctors cleared him for a few days of R and R while his counts build for phase two chemo on this coming Friday.  We are still very cautious because Davis's immune system is suppressed, and he is required to wear his mask while in public and wash his hands incessantly. He does take his mask off to eat and for pictures on occasion.



nothing is better than
fair food



Saturday, we were able to go to the fair long enough for Davis to fill his craving for fair food. We were nicely surprised when we discovered that there was all of thirty people on the grounds. I guess we picked the right time to go. After he had his much-craved orange shake-up, nachos, and snow cone, we headed home. We had an impromptu cookout with family, which provided much needed fellowship. Davis fizzled during the cookout and ended up on his little futon in front of the TV.  A few hours later, Davis was doubled over with intense tummy pain. We called the doctor who told us to wait it out a bit.  After some Oxycodone, he was peacefully resting. 



gotta love these kiddos
and sis. dee

On Sunday, Davis woke up with a migraine. He still managed to get ready for church. We are sure to sneak in and sit in a secluded area. I head in early and wipe down the area with Lysol wipes, which has become second nature whenever we venture out in public. Davis's headache got the better of him, and he fell asleep and slept the entire service. As he was sneaking out to the car, his friends, very eager to visit with him, posed for a quick picture.



waiting for food and fun



Davis was hoping to go to the Dixie Stampede for vacation this year, but the drive to one is longer than he can bear riding in a car. We decided that the Medieval Times might suffice. We headed up to Chicago after church and attended the show. The kids loved it!  It was quite a hit.

We had fears of staying in a hotel because of all of the germs. We took precautions by Lysol wiping all the surfaces down and spraying Lysol on the bedding and carpet. We brought his own bedding, and he wears shoes in the room. I guess we can never be too careful.



P.F. Chang's  . . . before the
first bite

 Davis has been complaining for the last couple of days that his skin hurts. He kept telling us that he had a sunburn. We knew he didn't because he had not been outside long enough to warrant any concern.  I figured he had dry skin. He doesn't like using lotion, and he has been soaking in baths much more than he ever has in his life. Dry skin . . .yep. I have been rubbing lotion on him since Saturday, and I picked up some Aloe after church and rubbed it up under his shirt to put his complaints to rest. Last night, it was a surprise to see that he had developed a lacy rash. Once again, another phone call to the doctor was made. It was agreed that it was probably a reaction or side effect of the Methotrexate that was placed in his spine. We are watching him for fever just in case it is not a side effect and is the beginning of a bacterial or viral infection.


he'll sleep well tonight

We ventured out today some. It was short lived. We ate a P.F. Chang's, and Davis became sick on bite #1 . . . headache, belly ache. We headed back to the hotel room, where he took a nap and woke up in a much better state. He even felt up to swimming. The hotel that we were staying at has a fantastic and super large indoor pool. The chemo medication placed in his spine makes him extremely sensitive to the sun, so the indoor pool was ideal. We practically had the whole pool area to ourselves (minus one other person).





We are so thankful that Davis and the rest of us were able to get away, even though it was short lived. And with the exception of a few hiccups, Davis has felt well and continues to build strength. We plan on using the rest of the week to get our affairs in order for the beginning of school.  I can't believe how quickly it is approaching.

We ask that you pray for strength for Davis. I worry about the upcoming chemo days that coincide with the starting of school. May the side effects be non-existent. We still pray for healing and CURE, as these are of the utmost importance. God works in His time, not ours.

Thank you. Thank you a thousand times over for praying with us.

We will keep you posted.

Information Overload

IPad makes the drive tolerable

8/5/2011:  6:00 PM

Let me lead by letting you know that Davis is in REMISSION!!!

Now let me fill you in on the day.

What a long day. We had to leave shortly after 5:30 AM to make it there by 8:30 AM for lab work, doc visit, and procedure prep.  Lab work came back pretty good. I was surprised to see that his white blood count, which has been hovering around 1.0 for the last couple of weeks, was up to 2.4. (Reminder: healthy children range between 5.0-10.0.) His hemoglobin had dropped a bit to 9.4, and his platelets were 124.  All OK to withstand his spinal chemo treatment today. His ANC (immune system) came up considerably; it is over 1100! (Reminder: optimal is above 1500)

Davis's bone marrow biopsy and spinal tap were underway at around 11:00 AM, and we were on our way home before 1:00 PM. He cried a lot while waiting for his procedure. No, not because he was in pain, not because he was scared. He was hungry. Needless to say, he ate Jimmy John's as soon as he was awake enough to eat.



yay! not losing weight anymore

While Davis was having his procedures done, we had an opportunity to talk with the staff about the next phase of treatment. If Davis is in remission, he would begin the second phase of treatment called "consolidation".  Consolidation phase is a longer phase (6+ months) that is designed to keep the cancer in remission.  He will receive chemo weekly (at times, four days in a row). There will be times when his counts (ANC and platelets) won't be high enough to receive chemo, so chemo will be postponed until his counts rise to a safe level. Understandably, chemo could last 6 1/2 months or 10 months. It all depends. The consolidation phase is best explained as knock-him-down-and-build-him-back-up phase.

As soon as we pulled in the driveway this evening, we received our much anticipated phone call from Dr. Shapiro. The preliminary results suggest that Davis is in remission!  Praise God! 0-5% cancer blasts present in the bone marrow is considered remission.  Davis was registering between 3-4%. While it was the hope that Davis would be less than 1%, we are still extremely grateful that he is in remission. Davis is considered high risk for relapse because he was treated with a round of steroids before we knew that he had leukemia. (This was back in June when we thought he had mono or some bacterial infection.) The steroids actually sped up the production of cancer cells in his bone marrow. We are awaiting the official lab results, which should come on Monday, but Dr. Shapiro felt very confident that Davis is in remission.



this is how his port is accessed. the
needle, which looks like a nail, is
visible in the clear plastic tubing



Davis will have a week off from chemo. On the 12th, we go back to start the consolidation phase.  And boy, it starts with a bang. He will receive quite a bit of chemo next Friday, and starting on Friday, he will have chemo every day for four days. This one chemo medication is notorious for making kiddos pretty sick. We are praying that Davis tolerates it better than most; he has done surprisingly well thus far. We are looking forward to our week of freedom and fun. Pending how Davis feels, we are hoping to salvage some of the summer and get out while his counts hold.

I can't express how thankful we are for all of your encouragement and prayers. Three weeks ago when we were told that Davis's bone marrow was producing 80-90% cancer cells, it seemed far from reality that he would be in remission in 29 days. But God is good to us and you have been good to us, and here we are.  I know that we are where we are - not by luck - but by the prayers and positive thoughts that have been offered on our behalf. It is humbling to know that we are so dependent on God's mercy and your kindness, and we are aware there may never be a proper way to repay all of it sent our way. The best we can do is to remember to pay it forward.

love this picture. love him more.

This journey has just begun. Although we have taken one gigantic step in the right direction, there are many obstacles ahead. As we continue to pray against short term and long term side effects, we will focus our prayers on staying in remission . . . forever. We will be praying against this "high risk" label and relapse. My last plea offered up before I close my eyes every night is part of the prayer that I pray over Davis when I tuck him in at night. It is not complicated; it is not poetic. "God, please heal my son. Please cure him." I know He will. Thank you for your continued support.

We will keep you posted.

I Stand Corrected

8/4/2011:  3:45 PM

Davis and I enjoyed an afternoon of swimming. I was tickled that he went outside and stayed outside . . . and he played. The problem:  his hair.  It was everywhere. All over him, floating on top of the water, making its way into his eyes and mouth. He decided it was time for a haircut. I gave his hair a good trim, but it seemed that I combed more out than I cut. Plus, the texture is very wiry and frizzy in spots, if that makes sense. He lost even more hair when he showered. We thought a little gel might weight it to his head.  He is sick of picking hair off of his face and out of his mouth (but I guess not sick enough to shave it). 

Maybe it is the mom in me thinking this, but even with a whole lot less hair, he is still a pretty handsome little guy.




Pre-haircut: pool fun and everywhere hair

Post-haircut: bit of a Justin Beiber do

Keep you posted.